This is a blog about epilepsy. I have lived with seizures for 25 years now and I want to share my experiences to allow others with epilepsy a chance to compare their experiences to mine and to allow those without epilepsy to understand further the condition and how it effects one. I had the VNS device implanted 4 years ago and have posted on that extensively. Please feel free to comment and I will try to respond.

Tuesday, September 30, 2008

I am now a day and a half into week 2 being home from the hospital. Unfortunately, my strength is still not up to full, so I have been taking morning or afternoon naps to compensate. Hopefully it won't take long to get back to the point where I can make it through the day without extra rest.

Monday, September 22, 2008

Scott had another restful, seizure-free day today. He continues to take a mid-morning and mid-afternoon nap but seems to be more like himself again for which I am very grateful!

The stress management appointment went well today. We discussed stress management in general, identified stress relievers for both Scott and myself, and reviewed a breathing technique to help reduce stress. Scott and I are going to try to put some things in place to help reduce the stress that the recent events have caused.

Scott has an appointment Wednesday morning with Dr. Robeson for the brain mapping session. I'll keep you updated and let you know how that appointment goes as well.

Sunday, September 21, 2008

Dr. Dean just called. She wanted to let us know that Scott and I have an appointment to meet with Jacqueline Walker at the Epilepsy Institute to discuss stress management and review some breathing techniques. Dr. Dean feels that this is an essential part of Scott's treatment - especially after the stress endured from the past two weeks.

Scott has remained seizure-free again today. We are very grateful to have had two straight days without seizures. Scott continues to rest as he remains a bit tired. That is to be expected after being in the hospital for nearly two weeks and from suffering from numerous seizures throughout the 2-week period.

Thanks to everyone for your many emails, phone calls and words of encouragement!Christa

Saturday, September 20, 2008

Dr. Dean finally arrived at the hospital at 8:00 pm this evening to release Scott. After an hour of processing the necessary paperwork and getting another dose of Depacon via IV, we were on our way home. (YEAH!!)

Dr. Dean prescribed Depakote Sprinkle (125 mg) capsules for Scott. He will be taking 2 capsules in the morning and 2 in the evening. Scott will also continue to take Keppra - although on a slightly different schedule. He will now take 1125 mg in the morning and evening as opposed to 750 mg three times a day.

Please pray that the Depakote Sprinkle and the Keppra are the correct meds, that the dosages prescribed are just the right amount and that Scott's increased seizure activity will finally come to an end.

I spoke with Dr. Dean a little while ago. I explained that the nurses here are terrified when Scott has a seizure and that they really aren't helpful to me or Scott. I told Dr. Dean that I thought it would be best to let Scott go home. I even explained that we would bring Scott in each day for blood work if she wanted.

I also told Dr. Dean that as soon as Scott received his Keppra and Lyrica this morning he again got very tired and started having some small seizures right after he laid down to rest. I told Dr. Dean that based on my observations I believe that Scott should be removed from Lyrica.

Dr. Dean agreed on both counts. So we're waiting on her to come up here so Scott can go home. Before releasing him, she wants to work with us to develop a plan. We are both of the opinion that the Depacon is working. At least he seems to be calm and able to rest once he's had it. Of course, it's through an IV so we need to figure out the correct equivalent of Depakote - the oral version.

Hopefully if we remove the Lyrica and get the correct amount of Depakote Scott won't suffer any more seizures.

We are going to re-schedule the brain mapping session for Scott. He's reacted oddly to some situations and we need to figure out if it's due to the frontal area of his brain where he had the growth removed. That will better help us develop a plan for dealing with Scott's epilepsy and the treatment of it. We also want to discuss our options with the nerosurgeon after the mapping session. He previously stated that scar tissue is "very tricky". Maybe we'll have some options once we better understand how it's affecting Scott. I'll continue to post here as I learn more.

Scott has had a very good morning thus far. He has eaten breakfast, has taken TWO walks around the 9th floor here at the hospital and is anxious to speak with Dr. Dean about going home today. Keep your fingers crossed that Scott will get his wish!

I just spoke with Dr. Dean. In light of Scott's recent seizure activity, she is going to start him back on a low dose of Depacon (125 mg) via IV. I explained Scott's lack of rest this morning and told Dr. Dean about how his eyes continued to move - even though his eyelids were closed. She explained that this was due to seizure activity. Hopefully this low dose of Depacon will be the answer... only time will tell. Needless to say, Scott will not be returning home this evening. Please continue to keep him in your thoughts and prayers.

Scott had a gran mal seizure at 11:55 am this morning. He had been trying to rest ever since breakfast this morning. But it was obvious from watching him that he was not resting well. His eyes, while closed, continuously roamed as though he were watching someone walk back and forth across the room - even though the only person in the room (besides Scott of course!) was me and I was sitting right beside of his bed. Right before the seizure Scott looked at me and told me that he was having very strange dreams about the end of the world. I teasingly asked if he was dreaming about Stars Wars again... at first he said no but then he stated that there was a bit of Star Wars in his dreams.

After the seizure, Hope, Scott's nurse today, gave him a shot of Ativan. Scott is resting at the moment and his eyes are no longer roaming. While Scott did not injure himself during the seizure, I sincerely hope that he did not injure his remaining IV site. After his first seizure yesterday, one of his IVs had to be removed because his arm had begun to swell and was very red. I know hoe much Scott hates being stuck with a needle and sincerely pray that this remianing IV will not need to be replaced.

I'm anxiously awaiting Dr. Dean's visit today. I want to speak to her about Scott's meds and get her thoughts on this recent flurry of seizure activity. Perhaps we made a mistake taking him off the Depakote. Or perhaps it's the Lyrica causing the seizures. I'm not sure how to tell but know that we must do something to help Scott. I'll continue to keep you updated. As always, thank you for your continue support and prayers.

Thursday, September 18, 2008

Scott had another gran mal this evening at 9:35 - just before turning in for the night. He was watching Good Will Hunting at the time of the seizure. As with the previous seizure, this one only lasted a few minutes. The nurse gave Scott a shot of Ativan. He is resting now and will, hopefully, have a good night's sleep.

Scott was able to get a very good night's sleep last night. He has been up since breakfast this morning and seems more like himself today. Dr. Dean just dropped by to check in on him. She told Scott that she was happy with his progress and wanted him to start walking around today to get his strength back. She has also taken him completely off of Depacon. (Today is his first day without it.) Dr. Dean stated that if Scott continues to do well today, she may let him go home tomorrow. (YIPEE!!) Hopefully tomorrow at this time I will be posting to let everyone know that we are on our way home.

Wednesday, September 17, 2008

Scott had another eventful night last night but remains seizure-free. He has been quite tired today and has slept for most of the day. He is eating well though and drinking plenty of fluids... and dreaming of the day he can say goodbye to the hospital staff and return home to play with Otto and Katze.

Tuesday, September 16, 2008

Scott had an eventful but seizure-free night at the hospital last night. The poor thing has been poked and prodded today. He is on oxygen, has two IVs - one for fluids and one for meds, is hooked up to a heart monitor, and was just hooked up for a sleep EEG. Dr. Dean is continuing to reduce his Depakote ER intake. (While here in the hospital, Dr. Dean is giving Scott Depacon instead of Depakote ER.) Hopefully he can get some much needed rest this evening. I'll continue to post updates on his progress.

Thanks again for all of the phone calls, emails, visits and meals. It is wonderful to have such loving and supportive friends and family. We love and thank you all!

Monday, September 15, 2008

Scott and I have just returned from Dr. Dean's office. He was unable to meet with Dr. Robeson for the "mapping" session because he was so tired from the three seizures. However, Dr. Dean decided to have another EEG performed. The procedure ran for a little over two hours and Dr. Dean stated that it looked better than the one taken last week.

While at Dr. Dean's office this afternoon, Scott had several simple partial seizures. Based on the fact that Scott has had 7 seizures since being released from the hospital last Friday, Dr. Dean has decided to re-admit Scott into the hospital. She has also decided to take Scott off of Depakote ER.

So, we'll be heading back to hospital shortly. Please say a prayer that the removal of the Depakote ER will halt his seizures and that Scott can return home, seizure-free, soon.

Scott had another three gran mal seizures this morning. One at 4:45 am, another at 7:45 am and a third one at 8:55 am. He fell out of bed during the second seizure and fell onto the marble floor in our bathroom during the third seizure. His neck and back are quite sore.

We head to Dr. Dean's office in a few minutes. Hopefully eliminating one of his AEDs will reduce, if not completely eliminate, his seizures. I'll post another update once we return from Dr. Dean's office.

Sunday, September 14, 2008

Scott had another seizure at 1:00 am this morning. He also had several simple partial seizures this evening while eating dinner. Scott has continued to rest for most of the day. We are anxiously awaiting the meeting with Dr. Dean and are extremely hopeful that the elimination of one AED will be the answer we are praying for.

Saturday, September 13, 2008

Scott had another gran mal (or tonic-clonic) seizure today just before 12:00 pm. Fortunately, he was resting in bed at the time of the seizure and did not get hurt. Perhaps the increase in Depakote ER or the new medication, Lyrica, is the cause of this seizure. Hopefully, we will know something more certain when we meet with Dr. Dean on Monday to discuss Scott's drug regimine. No one, including Dr. Dean, wants Scott to take 3 AEDs so the meeting on Monday will provide Scott and Dr. Dean with an opportunity to discuss and determine which medications Scott will continue to take and which one he will stop taking. Please say a prayer that Scott and Dr. Dean make the right decision for his care.

Friday, September 12, 2008

We arrived home this evening around 6:30 pm. It was so nice to see the huge smile on Scott's face as he played with Otto and Katze, our dog and cat. Unfortunately, just before turning in for the night, Scott had a petit-mal seizure (also known as an Absence seizure) that lasted for only a few seconds. We're not sure of what brought the seizure on... perhaps the excitement of returning home or not enough rest today. Anyway, I am sooo grateful that Scott is in bed now and seems to be resting comfortably.

Scott had another restful night here at the hospital - despite the sleep study monitor. He has eaten breakfast and lunch, has completely dressed and is now sitting and waiting, as patiently as he can, to be released. Hopefully it won't be too much longer now. We'll continue to keep you posted.

Thursday, September 11, 2008

Still here in the hospital. Dr. Dean is going to start me on a new drug, Lyrica, tonight. Hopefully that works and they will let me out tommorow. :)

As for the PET scan, Dr. Dean reveiewed it and believes that the seizure activitiy is still eminating from the scar tissue left over from my brain surgery 15 years ago. She is going to review these results with the neurosurgeon that implanted my VNS to see what, if anything, can be done.

Dr. Dean is also performing a sleep study on me tonight to see how well I am sleeping. Hopefully I will know more tomorrow.

Scott had a restful, seizure-free night. He ate a full breakfast of french toast and sausage earlier this morning and is resting again now. We are still awaiting the results of the PET scan. I'll continue to keep everyone posted as I hear more.

Please also accept our sincerest thanks for all of your calls, emails, visits and especially the prayers that have been lifted up for Scott's speedy recovery. We are truly blessed to have such loving friends and family.

Wednesday, September 10, 2008

Scott just had another tonic-clonic seizure a few minutes ago. It happened just as the telephone was ringing. The seizure only lasted two minutes and while Scott did take several jagged breaths, he did not stop breathing. Scott's nurse, Tracey, just gave him a shot of Ativan and he is resting now.

Scott was able to rest pretty well last night even with the usual headaches of being hospitalized. Dr. Dean came by around midnight to check on him. Luckily, he was resting peacefully at that time. However, I quickly explained Scott's frustration at being woken up every few minutes and reiterated that one purpose of his hospitalization is to ensure that Scott is able to rest. Dr. Dean agreed and immediately instructed the staff to NOT disturb Scott for the rest of the evening. While the nurses did continue to check on him each hour, they never woke him.

While here last evening/this morning, Dr. Dean explained that Scott's EEG was normal. She also stated that she wanted him to have a PET scan today. I inquired as to whether or not Scott should have a sleep study - something we have discussed in the past - however, Dr. Dean stated that she first wanted to see what, if anything, the PET scan showed. When asked, Dr. Dean was not able to indicate how long Scott may be staying in the hospital. Keep your fingers crossed that Scott's stay will be short. I know that he longs to return home soon.

The staff arrived to take Scott down for his PET scan at 7:00 am this morning. He was a real trooper - thanking each and every one of them for their help. It is my sincere hope and prayer that the PET scan will reveal something - anything - that may enlighten us on the recent flury of seizure activity and allow us to start on a new course of action to help reduce it. I'll continue to update you as I hear more.

Tuesday, September 09, 2008

Scott had a severe tonic-clonic seizure at 4:00 this morning. This seizure included many "firsts" which I have noted below:

1) The seizure lasted a full 45 minutes. This is very unusual as Scott's seizures usually last fewer than 5 minutes.

2) During the seizure, Scott let out an excruciating howl as if he were in intense pain. In the many seizures I have witnessed, I have never hear Scott make this sound.

3) Scott's legs were rigid throughout the seizure. I found this to be unusual because Scott's legs are usually bent as his usual tendancy is to collapse just before the clonic phase of the seizure begins.

4) Once the clonic phase of the seizure ended, Scott took several deep, jagged breaths and stopped breathing - which is usual for him. What happened next, however, is unusual. Usually Scott returns to normal breathing. However, this morning he again took several deep, jagged breaths.

5) It took Scott an hour after the seizure ended to recover and answer even the simplest of questions - even though I swiped his VNS magnet 4 different times over the course of 1 hour and 45 minutes. This is quite unusual as Scott normally recovers quickly and can answer very simple questions after only a few minutes.

We are not sure what triggered this seizure. Scott had eaten well the day before and had taken his medication on time. He did not seem stressed, worried or upset about anything. He was a bit tired last night and went to bed at 10:30 pm but he was sleeping peacefully when I turned in at 11:00 pm. Perhaps Scott is still not sleeping well or getting the much needed rest he needs. Or maybe it was caused by the Depakote ER he started taking 3 months ago. Or maybe still the seizure was the result of the Lamictal leaving his system. (Scott had been reducing his Lamictal intake over the past 2-1/2 months and completely stopped taking Lamictal approx. 2 weeks ago.)

I called The Epilepsy Institute at 8:00 am this morning and requested that Scott be seen. We arrived there shortly before 10:00 am so that Scott could have an EEG performed. Nurse Cindy also took several vials of blood to see what they could tell us. While we were in the office, Dr. Dean called from the hospital where she was making her rounds and stated that she wanted Scott admitted to the hospital for observation and further testing. At this time, we believe that Scott will remain in the hospital until the end of the week. I'll continue to post updates on his condition.

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What is Epilepsy

Epilepsy is a disorder characterized by recurring seizures, which are disturbances in the electrical activity in the brain. Seizure types range from a momentary disruption of senses to a loss of consciousness and violent movements that can last for minutes. There is no single cause for epilepsy; however epilepsy can sometimes be associated with an illness, head injury, or abnormal brain development. It is estimated that 1-2% of the population has epilepsy, and of those, approximately two-thirds respond well to medical treatment.